Pheo-like Symptoms

• By joyceg98
• Posted April 15, 2007 at 8:56 pm

You're in the right place, and we're glad you're here. Some of the other members may be able to speak directly to the symptoms you are experiencing.

It sounds like you are going to the right cast of health specialists. If you haven't made significant progress by now, then I would suggest a couple of things...

(1) Have you had a blood test called "plasma free metanephrines"? If not, ask for that one specifically. There is a discussion in our handbook (vhl.org/handbook) on preparation for pheo testing. They don't always tell you about this, and don't always tell the lab people either, but see if you can get them to do the test with the resting period. If not, don't get upset about it, but it's better with the resting.

This test is not performed at all hospitals, but they can send it the Mayo clinic for processing. Mayo has laboratory services group that does tests for hospitals all over the country.

(2) You might want to contact the NIH and inquire about their research protocol for pheochromocytoma. They study all kinds of pheos, and also what they call a "pseudo-pheo" -- it acts like a pheo but they just can't find it. You will find information on who to call and what information they will ask you for at www.vhl.org/trials.

Have you been tested for VHL? You don't mention it, and it's not a requirement, but here's another odd-ball suggestion. Have you had an MRI of the brain? It could be that there is some cyst in the brain that floats to a different place when you are lying down? That's a pure guess, but it would seem to me that an MRI of the brain would be a good thing.

Other folks who have been there, please jump in.

Best wishes,
Joyce

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• By FranMott
• Posted April 16, 2007 at 3:30 pm

Besides the pheo possibilities and good suggestions, here's an additional thought regarding the positional headaches. MRIs were included in the list of tests done, but it did not say what area was looked at. Along with the brain, don't forget to look at the entire spine. Pressure anywhere in the spine being put on something like the channel of fluid flowing through the spine and bathing the brain or on the nerves which run through the spine and go up to the brain, can have an effect way up at the top. It's easy to understand when you consider the position and gravity and remember that everything is connected. I have non-related VHL lesions in my S-spine (the very bottom portion of the spine where we usually do not get VHL lesions) which cause headache if I lay down. Who would have suspected that - when the brain tumors I have do not cause me to have any headaches? Good luck searching for your answer. If you are uncomfortable contacting NIH yourself regarding pheos, consider taking all the information you get from the VHL website to your doctors and ask if they would consider assisting you with this.

Regards,

Fran
(Michigan)

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• By Deededell
• Posted April 19, 2007 at 4:34 am

I hate to always be the cynical one, but after going 3 years of undiagnosed pheochromocytoma's in both of my adrenals--- it has made me a bit cynical. It doesnt seem just enough to have symptoms of pheo's for the doctors to keep digging. They want to wait until you are in constant full blown attacks. When my pheos were present my potassium kept falling to dangerous levels. They said I wasnt drinking enough. My heart rate would hit 150 or above and that was me having anxiety. I would lay in bed and hear my heartbeat in my ears, I was being over zealous. I would sweat and be so hot that my skin would crack and peal and I was too embarrassed to go anywhere, that was because I was fat. Then came the stomach sickness. I vomited everyday, all day long-- I was dying. Finally, and I do mean finally, after 3 days in the hospital they decided to look at my cat scans again and lo and behold a pheo in each adrenal. So, then what did they say-- Sorry!. After pheos removed I was left with a few scars, but to my amazement my potassium never dropped again. Pheos were feeding of my potassium. They have said since surgery that they know there is another elusive pheo, but it is just not showing up. However, I have had 6 admissions since November and instead of digging to find the pheo they are convinced that I want medical attention and the drugs you can get in the hospital. Yet, just like I told them this week.. I want attention from my devoted husband, my 3 amazing children, my army of precious and wonderful friends, and even my dirty, needs a bath, dog. If I wanted drugs-- I have bottle after bottle of drugs in my house. I don't need to come beg for drugs, but thanks for asking..

It will be a year since my first pheos were removed. Now I am loosing grams of blood, my whilte count is over 20, my heart rate stays from 107 to 156, I am puffy as in cloud like shape, my head hurts daily, my vision has silver fish, my heart beats so irractic that I can't catch a breath, and I still throw up 2-3 times aday.

I am sorry to have rambled. I just want to know if anyone has any other suggestions. I feel sorry for all of you who have had to prove that you are sane before someone, anyone would listen that you might be in danger. How can we change this? I told my husband and when I said it I feel like my life will not be done until I make a difference. Our 3 children have the VHL gene 3 thing going as well. 2 of them have already had 1 adrenal removed. When they watch me suffer, their thoughts are valid. "Is this what my life is going to be like?" I want to change things before I die. I want to die knowing that my children will not have to endure the stupidity and hatefulness that I have at the hands of physcians who take a hypocratic oath that says "First, do no harm". We are the family that has put our name on every study out there. Our first son died in heart surgery at 13mths, but looking back now--- no doubt VHL had gotten him too. That means me as mom, and all 4 children have Von Hippel-Landau. Why won't people study us. I am so afraid not for me, but for my children. I and my children want to make a difference. Does anyone have any thoughts of what I could do to make the children feel like they are steadily trying to help find a cure for Von Hippel- Landau.

I like to write encouraging post with uplifting thoughts to all of you-- yet, today I feel defeated. Thank you for allowing me to vent. Thank you for understanding. I would like to share this one funny moment that every VHL family needs. My kindergarten was looking for a "Show and Share" for the letter "V". We were struggling. So, my daughter says "Caleb, go stand up there and say "V" for Von-Hippel Landau-- that's me". We all laughed and I felt a warm sense of something saying "They are okay, right where we are, they are okay" Thanks for listening

Deede

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• By joyceg98
• Posted April 20, 2007 at 12:10 pm

Call me, and let's work out a plan. Joyce Graff 800-767-4845, ext. 4. I'm going out now to walk the dog but I'll be back by 12:45.

You probably want to apply to the NIH program discussed at www.vhl.org/trials but we can talk it out and see.

Best wishes,
Joyce

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• By Sleepy
• Posted April 28, 2007 at 5:44 pm

I have been away for two weeks with no access to email.
Thanks to all of you for your feedback.

Joyce, were you referring to Deede to call you or to me?
Yes, I have had the plasma-free metanephrines test, although I can't remember about the resting period and I have also had a clonidine suppression test - both negative.
I have had MRI's and CT scans of the brain on more than one occasion. I have had MRI's of the kidneys and adrenals. There was nothing to see on the adrenals but there were some small cysts on the kidneys which I was told were nothing to worry about.
One thought: I did take clonidine for about 18 months and this took away my panic/sweating symptoms but did nothing for the headaches. Eventually I became tolerant to the clonidine but it was a great 18 months!
In view of clonidine being the subject of the suppression test, I wonder if my great (even if temporary) improvement when using it proves that I don't have a pheo?? Any comments please?
Regarding the NIH, I have begun some email correspondence with a Dr Karel Pacak whose name I found on these pages. He is being very helpful.
One question on the pseudo-pheo, even though they can't find it, does it give positive results to all the tests or can you have a pseudo-pheo when you have negative results?
I have not been tested for VHL.


Regarding Fran's comment, at my last visit to my neurologist, he proposed injecting a tracer in the base of my spine and monitoring its progress over a couple of days. He was wondering if there was a blockage somewhere in the spinal/cerebral fluid system that was affected by gravity and such a test MIGHT show something. I didn't have it done because I have had so many tests and procedures done that haven't come to anything. Fran, how did they discover the lesions in the base of your spine? Was it through such a test? If it is a good test I’ll have it done even though it sounded a bit hit and miss to me. Incidentally, this is the first time I have heard of anyone else suffering from supine headaches and is actually encouraging! How do you deal with them?

By the way, I have tried anti-depressives (all the SSRI’s, imipramine, etc) to limit the panic-type excursions of blood pressure but they all made me feel worse – more sweaty and more panicy! However, exercise and/or alcohol do work very well for the blood pressure (in addition to my medications).

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